Illustration by Jonathan Bartlett
Paul Daugherty and his wife Kerry were determined not to let their daughter Jillian, born with Down syndrome, grow up needy, dependent, or isolated. And throughout her childhood, spirited, resilient Jillian was up to the challenge. Then came adolescence. Can your child have it all when “all” is supposed to include dates, dances, and teenage romance? In this excerpt from An Uncomplicated Life, his new memoir about his daughter, the Cincinnati Enquirer’s sports columnist celebrates a rite of passage—complete with wrist corsage.
You can’t make the world see your kid the way you do. The random moments that told us who Jillian was, and who she could become, weren’t often on public display. Just because we saw her as extraordinary didn’t mean everyone else did. Every parent thinks his child is extraordinary.
We did well with things we could control. Jillian’s education could be managed, even if it meant wielding the law like a cudgel. We could teach her social skills and basics such as counting money, ordering from a menu and, later, negotiating the byzantine public transportation system. We would give free rein to her will and her spirit. There was never a problem allowing Jillian to be Jillian.
We couldn’t make her peers be her friends, though. At a certain point, Jillian stopped getting invited to birthday parties and sleepovers. She ate alone in the school cafeteria. We couldn’t do anything about that. Perceptions can be changed. How kids choose their relationships is a little trickier. Jillian was fully included—but not in all things.
No one was overtly cruel. If a peer had referred to her as a “retard” or something equally awful, Jillian would have been hurt. No one did that—ever. The separation was more subtle, and Jillian’s mind wasn’t locked into subtleties. She had plenty of room for compassion and empathy, but not much for introspection or acute observation. If kids said “hi” to her, if they maintained a surface cordiality, that was enough.
We poked and prodded a little. Her answers were always the same:
“How was school?”
“Oh, I had a great time.”
“What did you do?”
“Same stuff.”
“What did you do at lunch? Sit with anyone?”
“Not really.”
I never wanted to put it into Jillian’s mind that sadness or self-pity could be a legitimate response to her occasional isolation. I never said, “Do you ever get lonely at school?” Instead, I’d ask of her solo lunch times, “Are you OK with that?”
“Yes, Dad. I fine.”
I wondered what the other kids thought of Jillian. I imagined them liking her, in an arm’s-length sort of way. I put myself in their 12- or 13-year-old shoes. Would I be friends with Jillian? Would we hang out? Would the widening gap in her ability to communicate scare me away? I have no problem dealing with people with disabilities. I’m an adult. What if I weren’t?
When I was 10 or 11 years old, the kids in the neighborhood spent lots of time playing sports in the street. One of them, a boy named Patrick, had Down syndrome. On the infrequent afternoons when Patrick came outside, we included him in our games. Patrick wasn’t as coordinated as the rest of us. He played with difficulty. When we played football, no one wanted to play center, so we assigned it to Patrick.
We cheered when Patrick achieved things the rest of us did ordinarily. Nice block, Patrick. Way to hike the ball. It made us feel good about ourselves. When we finished our games, Patrick went home by himself. No one invited him to have a Coke.
I look back at that time now with an informed regret. We patronized Patrick; we didn’t befriend him. Sympathy without empathy can be hollow. If I met Patrick’s parents now, I’d tell them I was sorry.
This isn’t 1968, and Jillian isn’t Patrick. But some of the same hesitations remain. That’s how I perceived things with Jillian and her peers as she moved from elementary school to the intermediate building.
I wanted more for her than that. The seismic fun of childhood is a codependency. From the time she entered kindergarten, Jillian had willed herself into the mix. Socially fearless and engaging, she wasn’t left out until fourth or fifth grade when kids started to notice she was different. It was a constant tug. Each new achievement took Jillian closer to a life of independence and choices. Each advancing school season deepened the separation.
Being in regular-ed classrooms didn’t ensure a regular childhood. Jillian’s classmates were never mean to her. They just moved on. Jillian would make her way in the world. If she couldn’t share the journey with friends and lovers, what would it mean? I wanted her to experience the expectant glow of a porch light with a young man late in the evening. I wanted her to know the smell of his cologne. She had a right to experience the mysteries of attraction, shared under moonbeams with a boy who made her happy. This was my greatest hope. It was my deepest ache, too, because I couldn’t do anything about it.
The possibility existed that some routine evening, Jillian would appear before us to announce she was different and want to know why. What would happen when the world stopped being her friend?
An image haunted me as Jillian passed through fourth grade to fifth, from the cocoon of elementary school to the multiple classrooms of intermediate school and beyond—a poster I’d seen, circa 1980, of a boy with Down syndrome. His head was bowed, his gaze pained. “I just want a friend,” it had read.
One Friday night when Jillian was in sixth grade, as Kerry and I honored our exhaustion with a movie, a pizza, and the couch, the poster came to life. Jillian entered the room crying.
“What’s the matter, sweets?”
“I don’t have any friends.”
We told her that wasn’t true. Actually, Jillian did have one very good friend. Katie Daly’s family had moved to town three years earlier. Katie had Down syndrome. She was a year younger than Jillian, and they’d become inseparable. Still, hearing Jillian say she had no friends made me ache in a deep and different place. There is no loneliness like the loneliness of a child.
Up to this time, we had owned a sort of reverse snobbery when it came to Jillian’s social life. We had wanted so much for her to be fully included in school that we didn’t put her in situations where she was associating with the kids in the special-education rooms. Jillian went to tap class; she took ballet. Up to fourth grade, she played basketball and soccer with typical kids. As she grew older, that left her in an awkward and limiting place.
Kerry recognized that it was time to fix what she could fix. When Jillian was in seventh grade, Kerry enrolled her in Special Olympics swimming and TOPSoccer, a program for kids with all manner of disabilities. Kids in wheelchairs played. Kids in walkers, kids on crutches. Autistic kids. Lots of kids with Down syndrome.
There was coaching and teaching. There were games and trophies and championships. Mostly, it was social. It was a chance for kids with disabilities to hang out. It was relaxed. Given the over-exuberance that rules youth sports now, it was nice. As someone who covers sports for a living, I thought the kids in TOPSoccer owned a perspective the rest of us should borrow.
It was also where Jillian met Ryan Mavriplis.
Ryan was two years older, and he attended a nearby public high school. He was every bit her equal, intellectually and socially. His parents, Ellen and Dimitri, had raised him the same way we’d raised Jillian. Jillian was about to turn 15 when she found herself alone one day with Ryan on the far corner of the practice field.
“I would like to ask you something,” Ryan began.
“What?” Jillian answered.
“Do you know that my school, Sycamore, has a Homecoming?” Ryan said. “It’s a dance. You go to dinner before. Have you ever been to a Homecoming?”
“No.”
“Would you like to go with me to Sycamore’s?”
I wasn’t there when Jillian got that proposal. I wish I had been. Sunshine, in human form. I spent years fretting her social life. In one instant, all that vanished. My little girl would be going to Homecoming. Cymbidium orchids under the porch light.
Kerry watched from a distance as Jillian and Ryan approached, beaming. Jillian was reserved for about a second. Then she smiled. Then she ran. “I have a date! I have a date!”
I’m not sure whom I wanted that moment for more. Jillian, of course. But for me too. Kerry and I had always been too busy advocating for Jillian to cry for her. I’d said to Kerry many times, “If Jillian isn’t sad, we shouldn’t be, either.” Of course, I didn’t believe that, even though Jillian was almost never sad. Kerry saw it differently. She had never doubted that Jillian would have boyfriends.
Jillian spent that night running around the house, offering joy in a singsong voice: “I got a da-a-a-a-te! I got a da-a-a-a-te! Woohoo!”
She needed a dress. She needed shoes—open-toed, which meant she would need a pedicure. There is some sort of women’s code that says no one can have a pedicure without also having a manicure. So Jillian would have that too.
She and Kerry spent an entire Saturday shopping. They went to at least five stores, where Jillian tried on 10 dresses. She loved them all. Jillian’s primary requirement was that the dress she chose be sheer enough to swoosh when she spun around. They settled on a teal number that stopped just short of her knees. It had spaghetti straps. It sparkled.
Finding shoes was a challenge. Jillian’s size-two feet were as tiny as she was. The shoes had to be dressy without looking like something a 6-year-old would wear. They settled on a black-strapped pair.
Kerry sewed Jillian a shawl to match the dress. On the day of the dance, she spent an hour doing Jillian’s hair into a perfect mass of well-mannered braids and made sure her makeup was perfect. She applied the powder, the blush, the mascara, and the lip gloss. Jillian beheld her reflection and found it pleasing.
“I beautiful, Mom,” she said.
“Yes,” Kerry answered. “You are.”
Ryan Mavriplis arrives at our house at 6 p.m. sharp—a young man in a black suit, white shirt, and a red tie, striding purposefully up the sidewalk and to the door, offering me his hand. “Good evening, sir,” he announces. “I am here to take your daughter to the Homecoming.”
His parents stand just behind him, beaming, and follow Ryan inside.
We had no idea, then, what this evening would portend. It was just a first date. Lives are filled with first dates. Living with Jillian meant living in the moment—anything else could be overwhelming. This was a fine moment.
Jillian stands at the top of the stairs, just out of Ryan’s gaze. Her formal
construction is complete: Dress and shawl, shoes and pedicure, manicure, braids, and makeup. Ryan has moved on to more introductions, in the family room.
“Dad, I so nervous,” Jillian says.
It’s impossible to describe what she looked like in that instant. That’s why we have poets and sunrises. Jillian was slim in her form-fitting teal dress. Audaciously red lipstick propelled her into womanhood. She paused at the top of the stairs to catch her breath before passing through this blooming window of time.
“Don’t be nervous, sweetie,” is what I manage to say. “It’s going to be a great night. The best.”
“Is Ryan handsome?” she asks.
“Yes, Jills. He is.”
She holds the railing until she reaches my outstretched hand. “I so nervous,” she says again.
The day Jillian was born, I thought this moment would never occur, and I grieved. I pondered the cruelty of her best steps stolen before she ever got to dance. Nearly 15 years earlier, to the day, I had hurt for my baby girl and what I believed would be a half-full existence. A life without Homecomings and proms—and the promise of both—is no life at all. I wondered why God would do this to my daughter. Now, I am at the bottom of the stairs holding her hand, knowing that, in a few hours, she will dance.
“You look beautiful,” I say.
A life without Homecomings and proms—and the promise of both—is no life at all. I wondered why God would do this to my daughter. Now, I am at the bottom of the stairs holding her hand, knowing that, in a few hours, she will dance. “You look beautiful,” I say.
Jillian takes the first walk of a lifetime then, down the hall and into the family room. Ryan waits, standing tall, a corsage box in his hand.
“Hey, Ryan,” Jillian says.
“Hey, Jillian,” Ryan says. “You look beautiful.”
He removes the wrist corsage—an orchid!—from the box. Kerry helps place it on Jillian’s wrist. “That OK?” he asks.
The flower is on the underside of Jillian’s wrist. She turns it upright. “Thanks, Ryan. You’re so sweet. I got something for you, too.” Kerry takes Ryan’s boutonnière from its box and pins it to the lapel of his suit.
Jillian says, “We’re a good team.”
They leave then, with Ellen and Dimitri, arm-in-arm across the lawn. We follow them to Ryan’s house, where several of Ryan and Jillian’s friends have gathered. Kids from soccer and Special Olympics, mostly. They’re all going to dinner first, and then the dance. Sparkling grape juice fills champagne flutes.
Ryan offers a toast: “I want to thank everyone for being here. To my good friends Ben and Robbie and Jacob and Margo and Jillian. I’m happy I have a date. Amen.”
Jillian adds her own words: “I love this time to spend with my boyfriend. I love my coach. I love this very lovely evening. I really love you guys.”
And amen.
I had worried Jillian’s disability would come to define her. Then Ryan arrived and a door opened. Everything was possible again.
There have been nights, more than I could ever have imagined, when Jillian and Ryan have lived my dreams for her. They’ve lingered in the porch glow. The scent of cologne has become familiar. Ryan has felt the delicate touch of a young lady’s fingertips on the back of his neck as they danced around the room. They have shared the mysteries. They’ve earned what lovers own.
That has all happened. But that first night, when Jillian returned to our porch from the Homecoming dance, Ryan offered a swift, gentlemanly goodnight hug. Kerry and I watched from our bedroom window. Much later, we would learn that Ryan began referring to Jillian as “the girl of my dreams” on that first date.
It was a nice thought, on an enchanted evening. At about midnight, Kerry and I kissed our suddenly bigger little girl goodnight.
“I love my life,” Jillian said.
Kerry hung the teal dress in Jillian’s closet. Not long ago, we fished it out from the pack of at least a dozen formal dresses our daughter has worn over the years. Long dresses for proms, short dresses for Homecomings. It still sparkled.
Originally published in the March 2015 issue.
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